All the tweets of #KidneyWk13

@kidney_boy Brilliant summary of Renal Week activity via Twitter. Particularly good way for us non-attendees to keep in touch. @ASNKidney
— Dr Damian Fogarty (@DamianFog) November 18, 2013

There was an incredible amount of twitter activity at ASN Kidney Week 13. I have downloaded the entire transcript and stitched the 9 pages into a single document for your downloading pleasure. It is 478 pages and 68,000 words long.

If that is not long enough for you could check out the hashtag misspelling at #kidneykw13 or the expanded #kidneyweek or in case you didn’t want any confusion with the epic 1913 ASN Kidney Week: #KidneyWk2013.

This never would’ve happened if the AHA/AAC had put Andrew Levey in charge of their risk calculator

Two items of note struck me this morning. The first was the fumble with the new cholesterol recommendations. The guidelines have been taking heat largely because they dramatically expand usage of statins in populations with that receive little to no benefit front he drug.

TheNNT is one of my favorite websites for patient discussions.

The last thing the new recommendations needed was a headline in the paper of record showing that their calculator over estimated 10 year cardiac risk by a mere 75 to 150 percent:

This week, after they saw the guidelines and the calculator, Dr. Ridker and Dr. Cook evaluated it using three large studies that involved thousands of people and continued for at least a decade. They knew the subjects’ characteristics at the start — their ages, whether they smoked, their cholesterol levels, their blood pressures. Then they asked how many had heart attacks or strokes in the next 10 years and how many would the risk calculator predict. 

Look what that risk calculator did to that Church!

The answer was that the calculator overpredicted risk by 75 to 150 percent, depending on the population. A man whose risk was 4 percent, for example, might show up as having an 8 percent risk. With a 4 percent risk, he would not warrant treatment — the guidelines that say treatment is advised for those with at least a 7.5 percent risk and that treatment can be considered for those whose risk is 5 percent.

That’s a big miss and I think it threatens to be a big mess if people lose confidence in our cardiology experts and their guidelines.

 It is interesting that this story is just getting legs today. The alarm was raised on the day the guidelines were released. From Medscape:

To heartwire , Dr Roger Blumenthal (Johns Hopkins Medical Institute, Baltimore, MD), who was not part of the writing committee, said he agreed with 90% of the information in the new guidelines. “To put that in perspective, I probably only agree with my wife 85% of the time,” he said. 

Namely, he is a little troubled by the new atherosclerotic risk score. Derived from FHS, ARIC, CARDIA, and CHS, it hasn’t performed all that well when applied to other cohorts, such as the Multiethnic Study of Atherosclerosis (MESA) and Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, he said. The risk score does not take into account family history of premature cardiovascular disease, triglycerides, waist circumference, body-mass index, lifestyle habits, and smoking history. 

“In my mind, we’re putting a lot of faith in this risk score,” said Blumenthal. “We’re probably going to be treating many more people, especially many more ethnic minorities, who get above this 7.5% threshold.”

In the end, I think we can agree that the cardiologists should leave the equations and formulas to the nephrologists, namely Andrew Levey. Hence the second item of note. Andrew Levey won the prestigious Belding Scribner Award. Levey is best known for creating the MDRD eGFR estimating formula and its successor the CKD-Epi formula.

I have gotten to know him as he is the editor and chief AJKD and spearheaded the creation of eAJKD. During every one of my encounters with him he has been humble, witty and friendly. During his Scibner acceptance speech he revealed that he considers his greatest moment in nephrology to be donating a kidney to his wife.

Levey donated a kidney to his wife. TLA. #kidneywk13
— Joel Topf (@kidney_boy) November 9, 2013

What a mensch.

There is a great interview with Andre Levey at eAJKD today. Take a moment and read it.

My Best Kidney Week

Every year that I go to Kidney Week it seems to get better. I had a wonderful time at this years Kidney Week in Atlanta primarily because it was full of new experiences and connections.

One of the highlights was getting the honor of introducing the KDIGO Mobile app. This iPad only app contains all of the KDIGO guidelines and support documents. The Chair of the implementation committee, Yusuke Tsukamoto, described me as KDIGO’s Steve Jobs. I can’t imagine a higher compliment.

Just got my hair cut. Asked for the full Steve Jobs. What do ya think?
— Joel Topf (@kidney_boy) September 16, 2011

The app is a great way to read the guidelines. We feel these are our first steps and we are excited to push the app forward. You can download it for free from the iPad App Store. Getting a chance to work with the KDIGO folks on this project has literally been one of the highlights of my career.

I aggressively live tweeted every session I attended. This is a huge 180° U-turn for me. See this post from last August where I blast the entire practice. Hobgoblin of little minds and all. Well all that tweeting resulted in me being the largest influencer of Kidney Week 2013.

That will be the only time I will ever be listed ahead of the New England Journal of Medicine.

The middle column is just the number of tweets by different individuals. I would like to call attention to three new tweeters. I maybe wrong, but I believe @rednephron, @ThePeanutKidney and @KatieKwonMD were all tweeting their first KidneyWeek. It is great to see new tweeters, especially ones who are so good at their craft. Welcome to the community.

Impressions is number of tweets times number of followers. Mentions is the number of tweets where an individual is mentioned along with the hashtag #KidneyWk13. To me this is the most important metric, since it indicates tweets that are generating interactions, through retweets and replies.

Pushing the twitter at #kidneywk13
— Joel Topf (@kidney_boy) November 6, 2013

The summary statistics show increasing twitter use at the meeting. Here are 2013’s numbers compared to 2011 and 2012:
Tweets and participants are rising.
I showed my poster on the nephrology blogosphere:

And I was invited to present my NephMadness abstract during an oral presentation. What an honor. I don’t have any photos but I did a screen cast of the presentation:

Nephmadness Unplugged is available here.

So now that we know that ZS-9 lower potassium, how much do you think it will cost?

One of the only positive trials at Kidney Week’s Late Breaking Trials Session was ZS-9, a novel potassium binding crystal that hopes to take the place of Kayexalate (Sodium Polysterene) in the hyperkalemic cocktail.

I wrote about the trial for eAJKD and was quoted in an article for MedPage Today.

Here is the skinny:

  • ZS-9 uses potassium specific pores to bind potassium rather than a cation exchange resin. It is highly specific for potassium, especially when compared to SPS.
  • In the phase 2 trial 10 grams lowered the potassium by 0.04 mEq/L per hour
  • In the phase 3 (753 patients!) trial the 10 gram dose lowered the potassium 0.78 mEq/L in 14 hours
  • No diarrhea
  • GI side effects were equal in the placebo and drug arms
I suspect this drug is on a smooth glide path for approval. My question is how expensive will it be? My guess is $200 per 10 grams. Please add your guess or over-under bet to the comments or @kidney_boy on Twitter.

Tolvaptan, ADPKD, and lack of vision at the FDA

About a year ago the ASN Kidney Week hosted the most exciting Late Breaking Trial Session I have attended. The session included the first public disclosure of the EVOLVE trial and the incredibly exciting results from the TEMPO 3:4 trial. I blogged about this for eAJKD and felt then, and still feel now, that this was an incredible breakthrough for nephrology. Unfortunately that announcement may ultimately be the high point for tolvaptan. In April the company acknowledged previously unsuspected liver toxicity. Then in August the FDA denied the application for an indication for ADPKD. Tolvaptan is still approved for hyponatremia and doctors can always prescribe the drug off label but the drug is so expensive I think few patients will be able to get it approved by their insurance companies leaving them to face the $273,000/year bill alone. I always suspected that Otsuka would change the price of the drug when they got a second indication for the drug that changed it from a short-term, in-house drug to a chronic out-patient indication. We may never know.

This is the second significant set back for tolvaptan. Otsuka had investigated it for heart failure with the flawed (in my mind) Everest Trial. Tolvaptan never sought an indication for heart failure because their trial was negative. This is what makes the FDA’s decision so upsetting, the TEMPO trial was positive, the drug met its primary end point (P=0.001), it slowed cyst growth. The secondary end-point, and more clinically relevant end-point, of decreased change in GFR was also positive (P=0.001).

Over a 3-year period, the increase in total kidney volume in the tolvaptan group was 2.8% per year (95% confidence interval [CI], 2.5 to 3.1), versus 5.5% per year in the placebo group (95% CI, 5.1 to 6.0; P=0.001). The composite end point favored tolvaptan over placebo (44 vs. 50 events per 100 follow-up-years, P=0.01), with lower rates of worsening kidney function (2 vs. 5 events per 100 person-years of follow-up, P=0.001) and kidney pain (5 vs. 7 events per 100 person-years of follow-up, P=0.007). Tolvaptan was associated with a slower decline in kidney function (reciprocal of the serum creatinine level, -2.61 [mg per milliliter](-1) per year vs. -3.81 [mg per milliliter](-1) per year; P=0.001). There were fewer ADPKD-related adverse events in the tolvaptan group but more events related to aquaresis (excretion of electrolyte-free water) and hepatic adverse events unrelated to ADPKD, contributing to a higher discontinuation rate (23%, vs. 14% in the placebo group).

Side-note about the choice of change in kidney volume rather than change in GFR for the primary end-point: This was used because ADPKD is such a slowly progressive disease that investigators feared if a treatment was required to slow the change in GFR, it would be prohibitively expensive and slow to evaluate therapies. The change in kidney volume was adopted by the ADPKD research community as an acceptable intermediate end-point after observational imaging studies found a tight relationship between change in kidney volume and renal prognosis.

When I heard about the denial  I figured the liver toxicity must have much more severe than I suspected. That turns out not to be the case. Bill Brazell (Bill is a former board member of the PKD Foundation and reader of PBFluids, who was at the FDA hearing) described the liver toxicity founding the TEMPO trial:

A small number of patients experienced potentially important elevations of liver enzymes (4.9 percent, compared to 1.2 percent of those who took a placebo), but the panel focused for hours on the simultaneous elevations in both liver-enzyme levels and bilirubin that occurred in just three patients out of the 860 who took the drug. In all three, the elevations occurred within 18 months. After those patients stopped taking tolvaptan, their levels returned to normal. No one suffered permanent damage

Certainly tolerable to my eyes, especially considering the health implications of dialysis and kidney transplant.

The thing that frustrates me the most is that there are no other proven treatments. We have nothing to offer our patients that works, the only effective therapy was denied approval. Silly FDA what do they expect these patients to do?

I hope Otsuka stays the course, provides additional outcomes data so we can get this approved and I hope the FDA opens it’s eyes and begins to see that in the absence of perfect we should accept good.

The article I linked to by Bill Brazell is an excellent discussion of the same issue from a patient perspective. Read it.

Calling all Apple nerds! See if you can predict what will be announced…Updated!

Apple already announced new iPhones and has a media event scheduled for October 22nd. If you think you have some Apple game see if you can predict the announcements. Go here to fill out your entry. Voting ends Tuesday morning.

The winner is…Milos who crushed the competition with a score of 40! He correctly nailed the price of the price of the two iPad minis, the camera specs of both new iPads, almost perfectly nailed the specs of the iPad Air (only blemish predicting an A7x rather than the A7). But where he really lapped the competition was predicting that the program would ignore the iPods and Apple TV. Strong work!

Second place was Steven with 30 points. I tied for fourth with Mhallang at 28 points. Thanks for playing.

You can see all of the submissions here.

Kidney Week Approaches!

This year for the first time (that I am aware of) Kidney Week is in Atlanta.

I was lucky enough to get both an abstract and oral presentation accepted. Both are on social media.

The Oral presentation is on the lessons from NephMadness. I will be speaking at 5:30 on Friday, November 8, in Room 409. The session is titled Nephrology Education and Research and runs from 4:30 to 6:30.

The poster presentation is on Thursday November 7 from 10 to 12. The poster is a review of productivity, longevity and consistency in nephrology blogs. It is poster number TH-PO880.

I would love to meet any readers of the blog, so stop by. Also if you post your abstract/poster information as a comment to this post I will make every effort to visit your poster and review it on from a design and nephrology perspective. Think of it as The Blogger Eye for the Scientist Guy.

See you in Atlanta!

Journal Club Wasteland

Nephrology and social media has some notable successes:

  • The Kidney Group has charted a unique course with Facebook by breaking the so called rules of social media in medicine. The Kidney Group regularly highlights individual patients, and the private lives of the doctors, nurses and families of the people who work at this private practice. They have a unique voice and engage with a community.
  • Renal Fellow Network has created a website that that is remarkable for its scope, longevity and quality. They are the only nephrology website that has mastered succession, an essential element of long term success. 
  • eAJKD and NephronPower, the twin brain products of Kenar Jhaveri have demonstrated remarkable creativity in making nephrology more approachable and interesting with word games, detective stories and NephMadness.
  • Twitter has increasingly been an amazing social media destination for intelligent nephrology discussion. Two particular tweeterari standout: 
    • Ed Lerma is doing great work with his #NephPearls project. 
    • And Christos Argyropoulos (feels like I should get some kind of reward for spelling that correctly) is defining nephrology on twitter by his frequent engagement and general cleverness.
  • The Ajay Singh and The Kidney Doctor has had tremendous success, it is fascinating having an A-level scientist join the social media ghetto. His productivity and gravitas provides a unique voice. 
  • This is by no means a comprehensive list. Notable additions which immediatly come to mind include Tejas Desai, Mathew Sparks, Jordan Weinstein, Mahesh Krishnan and I am sure I have forgotten too many others. (Please post your umbrage in the comments)

Each success teaches us something about how social media works in nephrology. Failures are generally less interesting, but since we still do autopsies let’s take a look at one of the highest profile failures in NephSocMedia: The CJASN journal club.

This project had a simple, straight-forward goal. Take an article from CJASN every month or so. Highlight it by giving both it, and the editorial away. Make the author available for some questions. Create an interesting online discussion of the article. Create, a national or even international nephrology journal club.

Here is a list of the discussions for this month’s article on Mediterranean Diets (October):

Here are the discussions for the initiation of RRT in CKD (September):

The April ’13 article on marajuana has no comments! If you can’t get the internet to comment on weed, you have a problem (the likely issue here was posting article on 4/22. Total missed opportunity, 4/20 was just sitting there waiting for a post on dope).

March and February, no comments.

You get the idea. Here is the data in aggregate

The January ’13 post has 3 comments, unfortunately they have nothing to do with The effects of hemodiafiltration on quality of life:

This is a failed project. Why did it fail?

I can’t get past the lock on the home screen of the project

What a way to turn people away. The site literally has a padlock on the front door. The idea of an online journal club is that the wisdom of the crowd can shine through. With enough eyes and mouths all aspects of an article can be turned over and vetted. By establishing this barrier to entry they limitted participation and turned people away. Most internet forums allow everyone to view discussions and only require logging in to comment. I can’t think of any reason to prevent people from browsing the discussion without first logging in.

The discussions are labelled not by first name but by e-mail address. So you know is going to be reluctant to leave a comment due to profound e-mail address embarrassment. Though I have to say I got a bit of a thrill seeing the e-mail addresses of George Bakris, John Asplin, Dave Goldfarb and other rock stars of nephrology revealed in their forum posts. In my opinion people want some degree of anonymity. CJASN did not allow that. But compared to other mistakes, I think this one is unimportant. Fixing this will not fix the Journal Club.

The funny thing is that the head of the site gets it. David Goldfarb has this blurb under latest news (note: if the link is from May 2012, time to change it from latest news):

This link is to an interesting editorial from the NYT about the value of free access and opening yourself up to critique by the public. I wonder if that blurb was Goldfarb’s way of nudging the gatekeepers that put the lock on the door?

But the reason CJASN Journal Club failed is this is a project that depends on a community it does not have. I spoke with Dr. Goldfarb about this and he realized this and told me that he hoped to create the community with the journal club itself.

The idea of an online journal club is a good one and has been executed in multiple venues successfully. The one I am most familiar with is the Twitter Journal Club run by Natalie Silvey. Transcripts from the journal clubs can be found here and here. I spoke with Natalie about her experience over twitter. Some interesting tidbits:

  • choose articles with general appeal
  • you don’t need to be a twitter superstar, she had only 500 followers when she launched it
  • publicity helps: the project was featured in Nature(!) and a number of her friends and followers were medics who helped stoke interest. This has started an avalanche of publicity and imitators. (see here, here and here)
  • The twitter format is very accessible to everyone
  • Since the host had no specific authority (she was a junior attending when she started it) it radiated approachability by other people. Having an author or similar authority figure can stifle discussion with presumed expertise.
One thing that I like about the Twitter Journal Club is that it’s an event. It convenes at a set time and you are either there or you miss it. You can go back afterwards to scan the transcripts but the event is done. Having people discuss things in real time makes it feel more collegial and interactive, a static forum is one derivative further away from the tradition journal club. An important part of the success of the twitter journal club is a blog that holds the transcript and the opening statement. A blog can be indexed by google so it is findable and preserved. Putting the journal club behind a password blocks this utility.
In fact, the password protection gives the impression that this knowledge is off limits, It is a rejection of one of the core principles of Medicine 2.0: openness, transparency and accepting the truth that the monopoly of information that physicians used to have no longer exists.

So where does this leave CJASN Journal Club? Dr. Goldfarb admits that they are at a cross roads and shuttering the whole site is being openly discussed. I think that unless they are willing to try a whole new strategy they should just put the thing out of its misery.

If they want to try CJASN Journal Club 2.0 I would suggest:

  • No paywall, password, or mandatory e-mail collection
  • Run the journal club on twitter or in a Google Hangout
  • Make it an event by partnering with other nephrology social media hubs (essentially admit that you don’t have a community so you will borrow RFN’s or PBFluid’s or NOD’s for a session
  • Dump the forums and
  • Replace them with a blog with three or four posts per month:
    • first post: introduction to the article
    • second post: editorial or author interview
    • third post: post for the twitter event (this could be combined with #1), include the questions that will be addressed during the chat
    • Fourth post: summary after the event with the transcript and analytics from Symplur
  • Allow comments on the blog to be the replacement for the forums
I allowed Dr. Goldfarb to review this before it was posted and I gave him an opportunity to respond.

I appreciate the opportunity to read your post and reply. I have to admit that I was hoping for more participation by the nephrology community in eJC; I too envisioned something more active. We at CJASN are very receptive to this feedback, as, in truth, we have had little feedback from ASN members before your post. So we are glad that you wrote and glad to consider ways to make eJC better.

There are other measures of participation, other than the amount of discussion, that perhaps are evidence of a higher level of success than you suggest. Maybe that participation is more passive. I’m not sure what measure of “success” you are applying to some of the online activities you cite. The Renal Fellow Network is terrific but the very thoughtful posts there usually have 0 to few comments made.

Perhaps you will judge eJC as less of a wasteland if I give you some recent stats.  There are 969 people subscribed who get the monthly email. In October 44 new subscribers have enrolled so we have not stopped. For September-October we have had 350 visits by 295 unique visitors, with close to 4 page views per visit. All of those sound pretty good to me.

I also have some anecdotal tales to share. My fellow’s father is a nephrologist in India: his group discusses the eJC article every month. “He loves it”, she tells me. There were a couple of formal discussions of eJC papers at King Faisal Hospital in Riyadh under the leadership of a former NYU fellow. MAYBE there are nephrology fellows choosing our article to discuss for their fellowship program’s journal club…maybe fellows are less likely now to ask their faculty to suggest an article to present.

I have thought several times that we need to do a survey of the subscribed members and figure out what activity out there is actually ongoing, because clearly I do not have the data about those sorts of activities.

One nice service that eJC, CJASN, and ASN provide is that the article is distributed free when it would otherwise remain available only to ASN members. So if it is simply a good will gesture of ASN and CJASN to the world, I don’t think that’s a bad thing.

As for “building a community”, I was inspired by Nephrol, Kim Solez’ listserv that started in the late ‘90s and remains intact and useful. I have seen it nearly every day for more than 15 years. People have been reading it and participating in case discussions all that time…it’s self-sustaining. Maybe I have to put more time into it myself, keep the conversation juiced and pertinent and engage the authors in some dialogue, but I didn’t want it to be MY opportunity to chat and exchange talk with the authors, I wanted to offer that chance to the nephrologists reading out there.

As for posting anonymously as you suggest; Nephrol is not anonymous, the participants are adults and posting serious stuff, not fooling arounds. It’s like nephrologists you never heard of getting up at a microphone at the annual meeting and saying “I’m Jones, from New York, and I’d like to know what you do with calcium phosphate stones in the salivary duct”, I didn’t think it was too important to offer anonymity. There have also been discussions showing that anonymity is responsible for many of the internet’s abuses and uglier sides. But we are willing to try that.

The journal clubs that happen at a particular time on Twitter are great and novel. Everyone has a time that they can participate and a time to browse what’s online. The one from BJU on stones and soda was useful and entertaining. But how to judge the success of those events is not clear: are you satisfied if there are 5 participants? 10? As a former chief resident, I gave up counting housestaff attendance at conferences: if one person yearning for knowledge shows up and thinks about the subject, I’ll be satisfied.

On a more minor note, I see your point about the lock on the entrance being slightly off-putting…maybe an open door would be a more welcoming symbol. ASN reasonably wants everyone getting to the site to have an ASN password. It’s free and does not require ASN membership. Perhaps some shy people see the lock and feel turned away.

We’ll have further discussions about this interesting subject. I’m grateful for this opportunity to think about what we have done and what we will do. Believe me, I am much happier being a “high profile failure” than a “low profile failure”, though I’m contesting that term, and I’m looking forward to you telling me how many people read your post and my reply.

I admire the hard work you put into your website and lectures, and your intelligent critique of the nephrologic world.


David S. Goldfarb, MD, FASN
Associate Editor and eJournal Club Editor, CJASN
Chief, Nephrology Section,
New York Harbor VA Healthcare System
Professor of Medicine & Physiology, 
NYU School of Medicine

Rules for giving really excellent, super good, top notch lectures

Thirteen rules for giving a really bad talk!
  1. Don’t plan too carefully; improv is the name of the game with technical talks.
  2. Begin by thanking an enormous number of people, including blurry little pictures if possible. It comes across as humility.
  3. Waste a lot of time at first on some small point, like the correct spelling of “Chebychev.” Whoever heard of running out of time? (See Rule 13.)
  4. An elaborate outline of the talk to come, phrased in terms the audience hasn’t heard yet, really sets the stage, and saves saying “I’m going to present the beginning, the middle, and the end.”
  5. Don’t give away your simple motivating example early on. That’s like stepping on your own punchline.
  6. A good way to start is with the most general, abstract statement possible.
  7. The best notation is the most complete notation — don’t skimp on those subscripts!
  8. Blank space on the screen is wasted space. There should be an icon for everything — if you say the word “Apple” an apple should tumble in from the right, etc. And don’t forget to read every word on the screen out loud.
  9. Humans are incredibly good at reading tables, so the more rows and columns the better. Statements like “you probably can’t make out these numbers but they are pretty much what I said” are audience confidence builders.
  10. Don’t speak too clearly: it isn’t necessary for those in the front row.
  11. Go back and forth rapidly between your slides. That’s what God made computers for.
  12. Try to get across everything you’ve learned in the past year in the few minutes allotted. These are college grads, right?
  13. Oh my, you are running out of time. Don’t skip anything; show every slide even if it’s just for a millisecond. Saying “This is really interesting stuff, I wish I had time for it” will make people grateful for getting “Chebychev” right.

From here, Hat tip to David Juurlink, author of this great potassium paper.